Is it 'getting old' or another Behcet's symptom?

[SuenMike]

I have recently been getting memory loss and difficulty remembering vocabulary. Also I have this feeling that I am falling forwards, although my partner and other people with me say I am standing upright. I was diagnosed with Behcet's 10 years ago and have had all the physical problems. I am almost 65 and wonder if it just getting old, or have I got symptoms which may suggest that I am beginning to suffer from neurological Behcets. I do have an appointment in seven weeks to see the marvellous team who look after me at Addenbrookes hospital in Cambridge. I am not sure if I should phone them and try to get an earlier appoinment.

[lesleyg]

Hi SuenMike

I would either consider keeping a diary of incidents from now until your appointment or otherwise if it's becoming a problem contact them.

I'm sure I've read somewhere about (some) Behcet's patients becoming unsteady.

I don't have neurobehcet's but do have a certain amount of unsteadiness. A neurologist thought I might have a bit of orthostatic tremour (it hasn't been pursued and the problem hasn't been serious enough.

Just before I was diagnosed a couple of years ago I broke my arm. My left foot was dropping and I kept stumbling. Nerve conduction studies showed problems with left leg. (Now that I think about it, the past two years have been such a blur, the problem with doesn't seem as bad as it was - must be all these drugs I've been trying out).

Glad to hear you have such a good team. It will be interesting for all of us to hear how you go.

Lesley

[Hidden]

Hi,

Getting old doesn’t mean you will necessarily have new/strange symptoms so getting them checked out is a sensible thing to do. Perhaps a trip to your GP would be a good idea as he/she could check for/rule out any other causes and it may be quicker.

In case you didn’t know, Neuro Behcets and Behcets with neurological involvement are different and the former is extremely rare.

[SuenMike]

Thank you for your comments. A diary is now being kept, and I have taken tigerfeet's advice and booked a GP appointment.

[devonshiredumpling]

Hi Sue

Sorry to come late to this but you know how it is, I'm sure!

I keep losing my words too and as I've always been so fluent it really scares and upsets me. When I told my new consultant he didn't seem to be that interested but that may well have been because he's trying to help me get back in control of my illness, which has spiralled completely out of control!

I've heard the team at Addenbrookes are brilliant - I have a friend who's been going there for quite a few years and I'd love to go. Sadly, I live right across the other side of the country (north Devon).

I'm sure the team will take your memory problems very seriously and you'll get some help. Do let us know how it goes though, eh?

[SuenMike in reply to devonshiredumpling]

Thank you for your kind words. I will let you know what happens.